1. Questions and Answers about Bone Marrow Stem Cell Transplantation prepared by the Armenian Bone Marrow Donor Registry

2. What is the connection between blood and bone marrow?  Blood cells live and function for a few weeks, then they die, and have to be replenished  Stem cells in the bone marrow are the source of red blood cells, white blood cells, and platelets

3. How do bone marrow stem cells help certain patients?  Patients with some blood illnesses make blood cells that are damaged and defective  This is due to defective bone marrow stem cells  Replacing their bone marrow stem cells with new and healthy ones allows them to have a continuous supply of healthy and functional blood cells

4. What are the most common blood related illnesses? Malignant  Different types of Leukemia (AML, CML,etc.)  Lymphoma Non- malignant  Aplastic anemia  Genetically inherited anemias  Fanconi anemia

5. What is the usual treatment?  Chemotherapy and Radiation therapy : Destroy cancerous cells patient goes into remission  Potential problems  Side effects: treatment may destroy healthy cells  Relapse: sometimes the cancer returns  Stem cell transplantation : Establish healthy stem cells in the patient’s bone marrow Healthy stem cells produce healthy blood cells

6. What is required for a transplant? Bone Marrow Stem Cells From volunteer donors

7. Can anyone be a donor? Yes, but with some restrictions:  Age: between 18 and 50  Health: generally healthy (no cancer, cardiovascular disease, HIV, infectious diseases, hepatitis, etc.)

8. Can any donor donate to any patient? Yes Provided their transplantation proteins (HLA) match

9. What is HLA? It is a set of proteins that:  Characterizes the tissue of each person  Is determined by each person’s genetics and is inherited from both parents  Is unique to each individual —much like a fingerprint

10. Who are the best candidates to match patient HLA type? 1. Self (in some diseases) 2. Identical twin 3. A sibling sharing both parents 4. Unrelated individual from the same ethnic group (even better if from the same region)

11. Why are donors from the same ethnic groups more likely to be a better match? Members of the same ethnic group are genetically closer to each other Therefore, they are more likely to have the same HLA profile

12. Rejection The patient’s immune system attacks and destroys the transplant What happens if donor and patient are not well matched? Graft vs Host Disease (GVHD) The transplanted tissue attacks and destroys the patient

13. How does one become a donor? Three simple steps:  Fill out a short form-strictly confidential (this becomes your official consent form)  Donate a small sample for tissue typing  Donate stem cells when matched with a patient

14. What is in the form to fill out?  Your address and contact information  Your brief medical history (all info in these forms is strictly confidential)

15. How to donate a sample for HLA typing? Mouth swab  The inside of your cheek is swabbed to obtain some tissue or Blood sample  A very small amount of blood (few drops) is collected from a vein

16. What is done with the collected sample?  DNA is extracted from the sample  DNA is analyzed for transplantation proteins (HLA type)  HLA type is entered in our data base (with full information about donor)  The database is the ABMDR registry  The database is safe and strictly confidential

17. What if a donor matches a patient?  The donor’s DNA is tested further for higher level of matching with patient  If donor matches 100% and is able to donate:  undergoes extensive medical checkup  if fit, becomes an actual donor

18. What is the procedure of an actual donation?  The donor is given a stimulant to increase the number of stem cells circulating in blood  S/he is hooked up to an IV in each arm  Blood is drawn from one arm  Stem cells circulating in blood are separated and collected via an apheresis machine  The blood is returned to the donor via the IV in the other arm

19. You mean this does not involve my spine?  Correct  Bone marrow stem cells reside in the spongy part of the hip bone  But some also circulate in blood. These cirulating stem cells are the ones that are harvested spongy bone (contains marrow) compact bone cartilage

20. A donor in the process of giving her bone marrow stem cells

21. An apheresis machine used for harvesting stem cells

22. Where and how is the “harvesting” performed?  In the nearest hospital or facility equipped for the procedure (including ABMDR’s Harvesting Center)  On an outpatient basis

23. Is there any surgery involved? No The donor is not even anesthetized S/he is fully conscious and awake

24. How long does it take to “harvest” the stem cells? 3-4 hours

25. Are there any risks or adverse effects to the donor?  No, it is a simple procedure  It is painless  Only excess stme cells are harvested  These cells are replenished within 2-3 weeks  Some donors experience mild flu-like symptoms for a few days (the effect of the booster treatment)

26. Are there any costs incurred by the donor? No  Tissue typing costs are covered by ABMDR  Stem cell harvesting costs are covered by the patient’s insurance

27. Los Angeles: 323-663-3609 abmdrla@abmdr.amabmdrla@abmdr.am Yerevan: (374 10) 20 83 11 info@abmdr.netinfo@abmdr.net Armenian Bone Marrow Donor Registry www.abmdr.amwww.abmdr.am Who can I contact to become a donor or to have my questions answered?

28. Save a life Be a donor